Setting a youth-focused research agenda for eating disorders during the COVID-19 pandemic

As every divided kingdom falls, so every mind divided between many studies confounds and saps itself.

Leonardo da Vinci

Age-divided research

Over 80% of eating disorders (EDs) have their onset in youth (Garland et al., 2019). The peak age of onset for anorexia nervosa (AN) and bulimia nervosa is 16, with the mean illness duration of AN being approximately 10 years. The optimal period for early intervention for EDs is the first 3 years of illness i.e. age 16–19, which straddles the age-based transition from child to adult mental health services in many countries. Since about 30% of young people treated in child and adolescent ED services require further treatment in adult ED services, they have an in-built disruption in their care. Overall, less than 5% of adolescents with a mental health disorder experience a satisfactory transition between child and adult mental health services (Singh et al., 2010). Patients with AN typically do not maintain treatment progress over transition (Garland et al., 2019).

The separation between child and adult specialty ED services also undermines the development of a transformative research agenda to meet the needs of young people during the COVID-19 pandemic. The Australian National Eating Disorder Collaboration surveyed 25 ED-specific services and found that there has been a marked increase in presentations of both new and relapsing EDs, with higher acuity and severity of these presentations (https://nedc.com.au/research-and-resources/show/issue-69-the-impact-of-covid-19-on-eating-disorders). In Australia and the United Kingdom, the past year has seen an almost doubling of both urgent and routine referrals for child and adolescent ED services (Solmi et al., 2021; www.abc.net.au/news/2021-08-31/eating-disorders-regional-teens-covid-19-pandemic-/100417812). The increased ED presentations have occurred on the background of substantially higher youth mental health-related presentations to primary care settings, community mental health services, and hospitals (www.theage.com.au/national/it-s-completely-shocking-when-it-s-your-child-what-s-driving-the-youth-mental-health-crisis-20210902-p58oa5.html).

Unpublished data from the rollout across England of the ‘First Episode Rapid Early Intervention for EDs’ (FREED) service model for young people, aged 16–25 (Potterton et al., 2020), found a relative increase of new AN presentations (vs other ED presentations) from around 30–50% during the pandemic. Postulated predictors of worsening mental health among young people during lockdowns include social isolation, increased screen time and excessive social media use, and parental stress. Uniquely for people with AN, the pandemic has highlighted the contradictory messaging between the fields of obesity care and EDs, with public health messages emphasising weight gain resulting from lockdowns, and social media focusing on weight loss and exercise (Solmi et al., 2021). The effects of a stream of public health messaging and social media content about obesity care should be investigated for its effect on those with AN.

What has been divided must be reunited

Rising service demand among young people during the pandemic needs to be matched by research to evaluate innovative interventions and to track the longitudinal course of EDs. There are some encouraging signs of increased investment. In Australia, the AUD13 million promised in the 2021 Federal Budget for a National Eating Disorder Research Centre is a good start, and one that has the potential to conduct research across the child and adult tertiary service divide, as well as across state and territory divisions. In the United Kingdom, seven new flagship research programmes on youth mental health are being funded, specifically to cover the period from early adolescence to the mid-20s, with a GBP24 million investment by UK Research and Innovation (UKRI: www.ukri.org/news/24-million-investment-into-adolescent-mental-health/). The ED flagship programme will delineate illness and recovery trajectories to inform personalised prevention and early intervention for young people (EDIFY).

There are promising interventions being currently developed for the care of youth EDs. The face-to-face emergED programme began in two South Australian headspaces that were located in low socio-economic-status (SES) areas (Radunz et al., 2021). This initiative was informed by the FREED programme, the evidence-based service model developed in south London, which is now being used across England (Potterton et al., 2020). The initial emergED trial found patients aged 16–25 achieved outcomes commensurate to evidence-based treatment offered in tertiary care settings for patients with mixed SES backgrounds. With over 100 Australian headspaces, emergED can be expanded during the pandemic.

Face-to-face group treatments are also showing promise. A group-based approach for the delivery of the Maudsley Anorexia Nervosa Treatment for Adults (MANTRA) has been developed and found acceptable for people aged 18 and over. The Royal Children’s Hospital in Melbourne has also changed its model of care since the pandemic by offering group-based family treatment, instead of individualised therapy (www.abc.net.au/news/2021-08-31/eating-disorders-regional-teens-covid-19-pandemic-/100417812). Recent research has underlined the importance of working in partnership with families, carers and friends, both in adolescence and emerging adulthood (Treasure et al., 2021). Such partnerships within the patient’s social network are crucial as lockdowns increase social isolation and family stress.

Short-term, guided self-help, which can be offered by non-clinical support workers or assistant psychologists under expert supervision, is also available. In South Australia, an evaluation of two different 10-session cognitive behaviour therapies (CBT) for non-underweight people with EDs offered by postgraduate clinical psychology trainees showed significant and large effect size improvements, commensurate with longer forms of CBT-ED (Wade et al., 2021). Guided self-help for Family Based Therapy (using the book Help your Teenager Beat an Eating Disorder) is also being offered for parents on the waitlist to receive this therapy. Additionally, guided self-help offered by people with lived experience to people on the waitlist for the Statewide Eating Disorder Services in South Australia is being evaluated, using the book Eight Keys to Recovery from an Eating Disorder.

Current virtual options under evaluation around Australia for youth include online CBT (Inside Out Institute, Sydney), and telehealth nurse counselling, and peer support programmes (Eating Disorders Victoria). Treatment centres across Australia have pivoted to telehealth during the pandemic, and the Centre for Clinical Interventions in Perth has produced evidence that evidence-based treatment for EDs via telehealth during lockdowns is acceptable to patients and associated with positive treatment outcomes (Raykos et al., 2021).

In summary, the pandemic has shone a light on the acute needs of young people with EDs and on ED researchers’ and clinicians’ ingenuity in adapting and evaluating treatments designed to cope with rising demand, but solid research funding needs to follow, commensurate with the burden posed by these disorders (Schmidt et al., 2016). Governmental funding for ED research is starkly lower than for mental disorders of comparable prevalence or clinical impairment (Murray et al., 2017; Schmidt et al., 2016). In Australia, for example, research funding equates to approximately $1.10 per individual with an ED versus $32.62 and $67.36 per person with autism or schizophrenia, respectively (Murray et al., 2017). In the United Kingdom, 1% of mental health research expenditure is for EDs vs 14% for psychosis. We need a concerted effort by experts on child and adult EDs to raise the level of research funding and activity during the pandemic and beyond.